Paza-Episode 1

PAZA 5

Disability and Covid-19: Documenting the experiences of women with disabilities during the global pandemic.

Recorded on March 19th, 2020

Full Audio-Text Transcription

(Music) Intro:

Hello everybody! Thank you so much for joining our conversations on Paza! Paza, a Swahili word meaning to amplify, is an initiative by This Ability Trust. Paza seeks to document and create visibility for the experiences of women with disabilities globally.

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Now let’s get into todays topic of discussion

Lizzie: So thank you so much everybody for joining. I would just like with a round of introductions I’ll start with you Ash.

Ash: This is Aiswarya Rao. I’m a pediatrician and I’m a woman with the locomotive disability. I’m calling from Chennai, that is in South India. So that’s about me, I run a shelter for women with disability in Chennai. We have about at any point of time 60 women with all kinds of disabilities staying in the shelter with us. And what we are looking for, primarily, through the shelter is employability of women of different capacities better employment opportunities. So that’s about me.

Lizzie: Great. Thank you so much Ash. And Sophie.

Sophie: Hi everybody. I’m Sophie Morgan. I’m from the UK. I’m a disability advocate, and also an activist campaigner. I work mostly in the media myself, advocating for better representation for disabled people but also work in retail and travel to help improve representation. They’re for disabled people too. So yeah, I’m based in London.

Lizzie: Thank you very much, everybody. And for those who do not know me, my name is Lizzie Kiama and I am the Managing Trustee of This Ability Trust. I founded This Ability in 2012, and our focus has always been advancing the rights of women with disability. This whole Corona virus thing got us thinking in terms of how communities a woman with disabilities are responding, whether this information is reaching them whether they have the necessary skills support and resources to navigate through this pandemic. But also on the flip side, we were thinking about, you know, the various recommendations that are being given in terms of trying to not get infected, the social distancing the isolation, and how, you know, women who disabilities have had to build these skills over the years because of a very inaccessible environment.

So, can we just get right into it because we would love to know, what is Corona virus from a medical stand point.

Ash: So, Corona virus, there’s just too much of information overload about the virus everywhere. As as a lot of us have Reading and hearing about it. But the simple facts of the corona virus is this. The Corona virus is a respiratory virus. It has always existed. But what we are dealing with right now is the novel strain of the corona virus. And it is an exceptionally, very infective infection. It started in China. It’s a it’s a zoonotic infection, which means the virus existed when wild animals probably bad and because of the mutation that rendered it very, very effective. It jumped from the bat into the human population, and from then on, it has been increasingly spreading from one person to another at an alarming rate. The common symptoms are very, very common just like any other flu, like fever, upper respiratory, sneezing, cough, and but lung infection. But the one thing that distinguishes the normal coronavirus or the disease The Covid-19 as it’s called, is that there is a mortality rate of one person, at least one person, but the mortality rate will differ depending on which healthcare setting you are in. A facility in Canada will be very different from a rural facility in India for example, but at this point from whatever data that health authorities have been able to combine, they say that rate of 1% which is very high in a highly populous country like India or some of the countries in Africa, I would assume. So, this is it and it is spreading, it is spreading alarmingly more than 166 countries. From this in December, there was only one. The first case was reported first week of December in China. But today, all 166 countries across the world have reported in some countries more than other countries. So, it is a as we speak, it’s a global pandemic and it is spending more and more. I think these are the basic facts.

Lizzie: Thank you. Thank you Ash, could you maybe speak about those students in India?

Ash: Yes, we are behind the global epidemic. So, as you know epidemics have four phases one is people who came into from the epicenter people in either China or the very high prevalence countries like France or Italy. So, that is that is the first phase of deployment and the second phase of the epidemic is contacts their family members or anybody that those people who actually tested positive for coronavirus when or who have come into contact with them. So, right now India is only at phase two. We are only seeing new infections. Like all of India, we have 1.3 billion population, but, as of today, the country has notified only around 160 cases. So it’s very, very early. But in the next week or even the next two weeks we expect, like what the health authorities, the foremost hydrologist in India, dr. john, he said that it’s going to be an avalanche of cases because of overcrowding, poverty, and lack of access to health care, we are going to have a huge problem on our hands. Right now. Most of the Indian population has heard about it, we’ll be getting a lot of information. But still we are in a state of denial. We’re thinking, you know, there’s just too much. They’re making a big deal out of it. Because we have, we haven’t really experienced the, the tragic part of the epidemic so far amongst us. So this is the India’s and India is again a huge country, hugely diverse population. We speak numerous languages very, very different. Cultural, many cultures in one country. So we have 36 states, each state is like a country is like a European country or even a small African country. So this diverse population, and every state has its own way of dealing with this epidemic. We’re not seeing the country’s apex body come up, put everyone on board, increase testing, and awareness. See, for example, last week, we had this information that went out and about, you know, coughing and keeping a safe distance, the general precautions, but that was all issued in one language in the only about 25 to 30% of the country speak the language, most of India does not speak Hindi. All our telephones whenever we call we had this call tune and this Hindi message, the most people didn’t understand. So there’s, it’s like, extremely poor coordinated effort by the government and we really don’t know what is going to happen. We are watching. So every state has its own separate response. Some states are responding better. My state is the southern state of Tamil Nadu, we can’t say is very poor, but we are also not the best we should do more. So this is India story and, it is frightening, actually.

Lizzie: And what about the women in the shelter that you you coordinate, you know, what’s the experience?

Ash: Yes, the shelter. It’s very funny, but the women in the shelter are all because we spoke to them about it. And they’re all the women with disabilities are always on cell phones and they’re accessing information. So they are, they’re all aware of this information. We have all the children there. They are the college ones. They are not going out. They’re staying in the shelter and we are advising the same, you know, hand sanitization and staying at least three feet apart. So, general precautions as of now no symptoms, luckily. So we’re just waiting, nothing more than that. Also, travel, a lot of the travel is suspended. So a lot of the women who want to go back home, haven’t gone back home. They’re just staying at the shelter. So we will wait and see what will happen. We have not been provided masks because masks are in very high demand. Also, it’s not necessary yet because none of them are having any symptoms. So, but even there is a shortage of hand sanitizer. We as of now we have some stock but we rely on water and soap and stuff like that. So I think we are somewhat prepared. We should be more prepared, but we will. You know, we will get to that level of preparedness. When the when we when we hit that bridge.

Lizzie: So in terms of preparedness, you’re left to your own resources. Is the government supporting you in any way? Absolutely.

Ash: No, no, they’re sending us information, do this clean this and, you know, provide mass and do this do this, but they’re not doing anything they just policing us. The government itself is pretty much confused. There’s no one person calling the shots there. So no, we are not having that. We’re not having any support from the government authorities yet.

Lizzie: Okay, interesting. Thank you for that. Thank you for that brief explanation of what’s going on in India. Sophie, Hi, would you like to share what’s what’s going on in the UK. And also, you know, if you’ve come across any innovative solutions that are connected Persons with Disabilities with this critical information and access to services.

Sophie: It’s got quite bad over here, as you guys might have seen in the news and the UK now is I don’t know how many cases that we’ve got. But basically London just gone into lockdown. And there’s a lot of procedures and structures coming into play to that stop people from coming in contact with each other. So government guidance has been very much that we need to socially distance ourselves from each other. And that’s meaning a lot of people are working from home. What we have seen, unfortunately, is that the government hasn’t put yet an outright ban on going into some of the public spaces. So for example, pubs and restaurants have been advised not where we’ve been advised not to go to them, but many people still are. And so we’re expecting there to be a full lockdown kind of in the same way that Italy has seen and it’s population locked down and kept at home, we were expecting that kind of same measures to start to happening here. But at the moment, there’s a lot of responsibility being put on the population themselves. And what that does is leave, because a lot of the responsibility is being put on the community that the population itself, to self regulate how to manage this, what we’re seeing is that people are going well, “It’s not really my problem. I’m not vulnerable, I don’t have a disability, this is for people in the communities that you know, it’s not me, it means that is putting that particular community a huge risk”. So a lot of disabled people are coming out trying to educate people as to how you know, vulnerable they feel and how important it is that we all look after each other at this time. And that being said, it’s also been really interesting to see how the community here, the disabled community here have responded with advice and guidance on how to best manage being at home and spending time at home and, and actually, you know, we disabled people, disabled women have a lot of experience of being isolated or being at home of not being able to get to work or having to prioritize their health over everything else. So as our communities are starting to see and experience the same thing, we are able to say look, we’ve been here before we can we can help you and don’t look to us as just vulnerable and you know, the one that needs to be looked after we in turn who look after you at this point, mentally, we can give you tips on how best to you know, structure your day and manage your well being and things so it’s been a really interesting few days and weeks, and of course, it’s still unfolding and changes are happening rapidly every day we’re getting different government advice.

So a lot going on and but to answer your other question about how we’re sharing information. And really what’s being put out there for disabled people. What I have noticed is we are leaning on each other. And we are taking information that is being put out by the government. And we are trying very much to decipher what is relevant to us. As I said before, unfortunately, because the government has not issued more hard guideline guidelines yet, a lot of the able bodied community is kind of saying, right? Well, that’s their problem. And that’s, that’s leaving us a little bit vulnerable, but we know how to look after each of ourselves. So we’re leaning on each other for advice and help and a lot of sort of community support networks cropping up so people can help those with disabilities. We’re seeing really amazing measures such as, you know, pieces of paper that are being distributed on social media that you could print off with information on how to educate people around you. If you have a compromised immune system and you don’t want to have someone come to your home that could infect you, you know, posters that you can put onto your walls, with information on how to educate them as to not infect you. So, you know, information and, and support is really rapidly spreading through social media, which is really exciting to see and encouraging because it can feel very isolating right now.

Lizzie: That’s true. But I love the fact that, we’re also able to shift that narrative from, the charity and the vulnerability that mainstream societies used to placing people with disabilities and now we’re shifting, and saying, that there are actually best practices that, society can borrow from the disability community

Sophie: I find it really interesting, you know, I don’t know about you, but I’ve watched you know, a number of celebrities around the world that I follow on social media, and they’re all “Day three or four, and oh, my gosh, I can’t handle it. melt down, you know, what am I going to do? And I’m like, hey, I’ve done this yet. You know, it’s kind of funny, we’re all sort of going, come on, you know, man up here? It’s really interesting. So, actually, whilst you know we’re watching the world kind of, of course, there’s very justified to be worried about what’s happening right now if that fear is justified completely, but the coping with the working from home, it’s really interesting to watch. Another thing and unexpected consequence that is yet to play out and I’m interested to see is how the world is having to adapt to people working from home and adapt to situations which disabled people have been in for a long time. Is that going to change the way that businesses actually encounter an organization’s look after us? Are they going to see now that have that now that they’ve seen all their employees to work from home and manage themselves from a different working environment? Does that mean that we’re going to see different changes when all this comes to an end? That will mean that disabled people can fit into the workplace a lot more effectively? I don’t know. It’s exciting, but I think there could be silver linings. Let me just say, I do see it’s interesting because I mean, I’ve had number of people reach out to me and say, you don’t realize I lost my job last year because I had to work from home because of illness and disability. And now all my colleagues are working from home. you know, the consequences to this are really quite interesting. So, yeah, we’ll see what happens.

Lizzie: I’m yeah, I’m also seeing the fact that you know, there might be a silver lining to all this and probably this pandemic will bring us to ground zero and, allow us to build systems that are truly inclusive for everyone and that work for everyone

Sophie: Absolutely and for once, we might see that this vulnerability that we all have as human beings, but many take for granted. We can see that the disabled who live with this can think in a very different way. I mean, it really could bring to the to the forefront a different perspective, that vulnerability is strength. That opportunity is found in adversity and disabled people are so resilient. And so adaptive when it comes to having to live in a world that doesn’t suit their needs, what can we teach the wider world about that?

One thing I was interested in hearing you talk about as just then is disabled women, you were saying a lot of people are on their phones. And I don’t know about you guys, but I’m on my phone right now. All the time. I mean, everyone’s saying it’s not healthy to spend a huge amount of time on social media, but that’s just really hard to do to not be on it all the time. And I wanted to know if any of you have found a really good hashtag or one place the way we can disseminate information through. At the moment with you know that I haven’t seen that here in the UK. It’s more we’re sharing accounts or people that might have a good voice or if you have charities or DPOs that know a little bit more, we can signpost to that. But have you seen anything a bit more disability focused?

Ash: To answer Sophie’s question on, you know, whether there’s anything specifically for information on disability and the epidemic right now. A bunch of us we call ourselves the Disability Rights Alliance in India, activists from all over India it’s a very loose social group, Social Media Group. So we put out a website on WordPress, it’s a very small blog, we call it the AIDER or Addressing and Including Diversity in Emergency Response, just a one page website but it contains all the links from government sources WHO, CDC etc. With some information very little, we just wanted to put everything in one place. So we will be adding to this, so this is an effort from the disability community for you know, providing information for someone with a disability and coping with the current situation.

Sophie: That’s really thanks for like, I’d love to share that here in the UK as well. And I of course after this, we can all connect and share what we’ve got resource wise I just feel there should be a global coming together of all of us like we are here now doing that we should bring in as many partners we are all connected to, because I do feel that the disabled community whilst we are being talked about as being the most vulnerable, especially here in the UK. That’s the conversation at the moment is that this virus is particularly threatening to that group of people. Everyone’s talking about disabled people and vulnerable people. It’s very important that the information gets to those particular people and that those people speak for themselves about what’s going on and what they need to learn. So yeah, and

Ash: Like you all mentioned, I did a search on Twitter, disability and the current situation, and the only thing that it threw for me was this work from home. You know, lots of people are talking about how people with disability have always propagated working from home and how it is so doable. So this is the only context in which disability is appearing on Twitter feeds here in India.

Maria Rosa: I want to add just something little because what I think is that we also need to be specific about how women with disability not only not all people with disabilities, is like how women are handling handle it. Sorry, and I think I mean, there are two important things, actually woman women with disability usually, I mean, are more isolated than men with disabilities. And actually, I mean, I can talk a little bit about Kenya, about Latin America them usually do the care job at their homes. So now, I think for some of them, it is true, there is a now we have the opportunity to learn about how to handle the isolation, also true that some of them are in really vulnerable conditions. Actually, I was reading something the last week about how women with disability are trying to handle the violence at home. I mean, the gender based violence at home, because now that in some countries, everybody’s at home all the day, they get anxious, and usually the violence is against them. So I can tell you, for example, and I think that’s important to maybe, to share, in Colombia, they open a hotline and there are women with disability. I mean, picking the phone, but they are giving support to other women with disability who are suffering violence inside home. And I think it’s very important to share this kind of experience because in some point, maybe we should start with those things like that. Because, women are not in the same situation than men with disability in the middle of this crisis.

Sophie: Really good point. I mean, all of the issues that women in general are facing now in increased violence, gender based violence, disabled women are disproportionately affected by that I can. I think that’s such a valid point.

Maria Rosa: And actually, for example, in some countries in South America, when somebody needs to go to the hospital is know the woman. They lead the woman for the second of the third option, and when a man is sick, everybody goes with him to the hospital, but when we when it’s about women, they don’t have the same story. To go down to the hospital. So yeah, I think, like woman in different conditions than men, and for sure women and girls with disability, are in a more vulnerable conditions.

Lizzie: Yeah, that’s definitely true. I don’t, I’m not sure, like what is in place in terms of, you know, emergency preparedness from your various governments, but I can speak for Kenya. And, you know, the women with disabilities are virtually invisible in, you know, programming and policy. So, to even allocate budgets that speak to the reality of women with disabilities and their needs is non existent. In refugee camps, for example, you know, things like issues around sexual and reproductive health are not taken into consideration, because it’s not something you know, the government has prepared for us. I’m curious about what your governments, your specific governments are doing from a social protection standpoint to ensure that maybe not only women have disabilities, but women in general are able to access services that they need on a day to day. Is there anything in India or the UK or Ecuador?

Sophie: Well, speaking from the UK, I have to say that we are in emergency response mode, it seems here so I, as far as I’m aware, so little is being done, measures being put in place, but it’s got to be done quicker. And of course, the community itself is recognizing that women with disabilities and girls with disabilities are disproportionately more affected by things like Gender-based violence. And so therefore, everything that’s going on right now, just we’re particularly vulnerable, but the problem is is that we’ve got so much to deal with the country is in lockdown is in panic, the army’s being brought into London to stop controlling people. It is, really that, rapid response. So, the answer is from me here. I think that we’re not there yet. We’re not ready yet. We aren’t prepared to help. And we’re doing the best that we can, of course, but I don’t. I mean, I say we, the government is doing. Yeah. But you know, it’s early days. And of course, at the moment, the real experience is a terrifying one for so many disabled people.

Clarence: Lizzie, we can also see that the government is trying to train the nurses on how to handle the coronavirus but for women with disabilities. When you go to the hospitals you can confirm that there’s no there’s no sign language interpreters for the Deaf. This is no accurate accessibility of the hospitals.

Lizzie: Yeah, that is a reality.

Millicent: You find the women, they go and fetch water from the river. And then here they’re being told you need to wash your hands with running water. So this is a woman with disability who depends on somebody else for such kind of services. So what is the government and you know, with all the money that is coming in, they have not even thought about this kind of this part of the population of Kenya, that they need to be included in whatever budgetary allocations that are taking place, whatever aid that is coming in to fight this, this particular issue, epidemic, because you’re being taught to sanitize, even in the urban areas, the middle income earning class, like know, the prices for the sanitizers have really skyrocketed. They’re not even available. So how is the government expecting a woman in the village to be able to access this kind of thing. So, I also believe that the ultimate information is being passed. It is to elite. It is not really speaking to our women with disabilities in their real actual, it’s not real. It’s a bit up there.

Sophie: As similar stories being told here in the UK that that even though Yeah, like you say that the hand sanitizers are being bought by other people and women with disabilities and people with disabilities are not being able to get access to that either. And, actually, you know, masks have been taken up, all of the resources and all of the things that are needed. For the day to day, lives of disabled people are being taken away, or the prices being put up. And other people are stockpiling and hoarding that and taking it away from people. So the government might be putting measures in place, but other people are taking advantage of it. So still, once again, disabled people are being left behind.

Lizzie: And also how this information is spreading, like I’m on social media. So, I get a lot of information like on Twitter, and, other social media platforms, but very limited information is being shared on mobile phones, the majority of the population in Kenya has access to those. But Internet, if you’re in a remote area, you don’t have, access to internet so even how this information is being shared

Sophie: Over here in the UK is that people are like I said earlier, they are realizing that that there are people hidden away thousands of people are hidden away with disabilities, now that everyone’s retreating into their own homes. So there is a more of an awareness or a sympathy, but still, the resources aren’t going to get to those people without the right, the right support to get to them. If that makes sense. It’s still, you know, there’s an awareness being raised, but yet people still don’t know how to get the resources there.

Ash: I just want to jump in right now and talk about how social distancing in some context for people with high care needs like a child with the cerebral palsy or somebody who’s completely dependent on caregiver for everyday living by family members or somebody assisting them? How are we going to do the social distancing? How is that going to work? So there’s no word about it. You know, anywhere any Advisory has not come up. Just a mention about how that can be done is not there. So I find that extremely, you know, upsetting. So, that’s one thing and also, I’m wondering about when we go into isolation about our mental health. Somebody who’s isolated, what I mean, how it’s going to affect somebody who’s already having panic

Lizzie: Psychosocial disabilities

Maria Rosa: Depression actually too.

Ash: Yes, depression. And especially somebody who is suicidal, but you’re isolated and you need to see somebody. I mean, how’s that going to work out in the days in the weeks to come? So I’m just wondering what we are going to uncover here.

Sophie: I really feel it’s gonna have to come from us. Not government.

Lizzie: I definitely think that it comes from us. Unfortunately, I actually like the flip side to this whole pandemic is because it’s allowing, it’s forcing us to look inward, and to not rely on Big brother to, solve our problems. We have to learn how to be self- reliant. I don’t think fear should be part of it. We need practical solutions, which we get from our networks. And this could be a network. I don’t know about the large organizations. I would be wary of, you know, trying to get them, to support because they’re also looking at the mainstream. You know, they have to solve problems that affect a large group of people and people with disabilities for a long time, they have not considered them a significant population. So why would they start now? I think it’s on us.

Maria Rosa: May I jump now? Now is the time I mean, of course, is up to this day to guarantee everybody, right. But now it’s also time to learn about the support networks and I think the feminist and I’m sorry, but I’m a feminist, but the feminist movement since the last two centuries, can teach everybody a lot. I mean, woman, we know how to support each other. And I think now, we cannot wait a lot of the from the States so it’s not Now, the time to I mean, to build support networks all around.

Sophie: So can I ask you in light of that, what would you say is the first what is the information that you think we need to spread first? Is it about the basics of how to protect yourself and sanitize and look after your well being on the basic level? Is that not getting through? Is it about how to manage when yourself isolating? Is it what Where do you think we could start because I feel very much in agreement women can help each other here as disabled women can help each other in particular. But what do we need to identify? Where do we start?

Lizzie: For me, I think centering women with disabilities in this discourse is critical. Like, this things that you know, for example, Ash, what you’re talking about, you know, a child with cerebral palsy who needs help from a caregiver, and this information that is being shared by government on how to protect yourself does not include a disability aspect. within this discourse is important, and whatever information is being put out there, whether it’s sanitation and hygiene, and you know, whatever it is, you know, how do we apply a disability lens to that, you know, and how do we look at it from a disability perspective, you know, how would a deaf person a blind person, somebody in a wheelchair

Ash: with lung disease, exactly how I would be cardiovascular disease?

Lizzie: Practically, how would they respond to this information? How does it make sense this is just my take.

Ash: I would, first of all emphasize or demand that all government information, their websites and their announcements today evening, our prime minister said to talk to the nation. And I’m just looking to see that he sent out a PMO officer a letter saying we want to sign language interpretation for his for his speech. But again, once country like India, we don’t have one sign language that everyone understands. So there are those challenges there. But we must insist that every information coming out must be inclusive. That’s one thing and then general information. And how do you make all other hand sanitizers? Because washing is again, a very big challenge for a lot of us, especially the limited mobility people. So that you must have access to sanitizers and stuff like that. And just generally information itself is more important.

Sophie: I think it’s so interesting to see how all of the issues that we face, I think you mentioned this before, one of you about how these are issues we’ve been facing forever lack of communication and the spread of information is, it’s something that just cuts disabled people off, you know, if you have any hearing impairment, you’re not going to get that information. It’s just compounded right now because of the urgency with which we need information. So, I mean, as somebody who uses social media as much as I can I don’t have a huge following, but I’m trying to spread as much information as possible. And I think that’s key, but like, you see so many people without internet, without phones, how do we get to them? And so I’m hearing it’s partly we want to lean on our government, but partly we want to take control for ourselves and take that give that information so I guess it’s a joined up effort, isn’t it? We need both.

All: It is a joint effort. Yes, it is. Yeah.

Millicent: Yeah. And I think we also have to use just our spaces make noise until the government has and does something about it. Because we are because if we don’t speak out, they will think we are fine.

Clarence: Okay.

Millicent: Yeah, we are Okay. I think it’s a high time that we use to whatever spaces that we are in. To call out and make the noise so that they realize that there’s a population that is being left behind. And that is equally affected by the epidemic, just like everybody else.

Lizzie: So I just want to thank all of you. I hope this was useful this. Thank you so much for your openness and for your willingness and for your time and energy.

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